Olivia Mckinney

Sept 25, 1998

We live in Columbus, Indiana. I'm 30 years old and my husband Patrick
turned 30 in January. We have two children, Olivia and Hannah (4 months).

Olivia is 4 years old. She turned 4 in January as well. I had an
uneventful pregnancy and was delivered full term. She was only 5lbs 9.5 oz
and 18 inches long. She was born with a birth defect called an
imperferated anus. There was no opening in her rectum. At 2 months and 4
months old she had corrective surgery. She was fine after that. At 5
months of age we moved to Rochester, New York because my husband's job took
us there. We found a real good pediatrician and started all the usual well
baby checkups. At 12 months of age she barely was crawling, only about 15
lbs, wasn't talking, feeding herself, etc. The pediatrician recommended we
start some developmental testing on her, my husband and I both agreed to
wait til her 15 month check to see if she improved, we convinced ourselves
that she had a rough start at birth and she just needed to catch up. At
the 15 month checkup, she didn't improve on any of her skills. We decided
to go ahead with trying to find out why she wasn't developing properly. We
had urinalysis tests, X-rays, MRI's, blood tests, etc., every test came
back normal. At this time we suffered our first miscarriage. Finally our
pediatrician suggested that we go to a developmental specialist and start
there. After much interviewing and going over Olivia's history, he decided
to do a blood test (chromosomal analysis). After one month the test
diagnosed Proximal 10 Q Partial Trisomy. Her 10th chromosome had an extra
piece to it. We were sort of relieved but devestated at the same time.

The doctor told us this was very rare. There was no known cases in the
United States currently. She has a life span like any other child but the
characteristics of the syndrome included small features, low birth weight,
poor growth, and developmental delays. Olivia had/has all that. After
her diagnosis (June, 1995) Patrick and I had a blood test taken to
determine if one of us were a carrier, both of us tested negative which was
great because we wanted more children and had already suffered one
miscarriage.

We started Olivia in home therapy services. She received speech,
occupational, physical and developmental therapy. She walked right before
her 2 year old birthday, didn't get her teeth until she was almost 2 years
old as well and the molars came in first!

In March of 1996, we decided to move back to Indiana and that's when I
suffered my second miscarriage. We moved back and continued home therapy
until she turned 3.

After finally settling in our home we decided we wanted more children.
During this time we went to the I.U. Medical Center for genetic counseling.
After much interviewing it was determined that Olivia's syndrome was
started at conception and not from one of us. There is such a rare chance
that a sibling would be born with the same thing, but I was also concerned
because of the miscarriages. They told us that is a whole separate issue
and its very common to have 2 miscarriages nowadays.

At the present time, Olivia is in a special needs preschool and rides the
bus to school, thats the highlight of her day. She had to go into a
center-based facility when she turned 3. It is a wonderful program. She
also receives speech and physical therapy there as well. She has a
developmental delay of about 2 years with some scattered skills a little
older. She feeds herself, rides a tricycle, and talks in about 3-4 word
sentences. At this time she only weighs about 30 lbs and is about 3 1/2
feet tall. She's never been on the growth chart for weight but the doctor
says shes growing at her own pace. She has no physical deformities, (a
characteristic of this syndrome) except for a small curvature in her left
foot that she had to wear corrective shoes when she was learning to walk.
She eats everything and loves to read books. She is a very loving child
but it seems she is starting the terrible two temper tantrums at the age of
4.

Update - February 2, 2000

Olivia is now six years old.
She is enrolled in a special needs kindergarten class and goes all day.
She gets on the bus at 7:30 a.m. and doesn't arrive home until 3:15 p.m.
She loves it!
She loves her class and has made many new friends.
Her speech as improved tremendously.
She is learning alot but still at a slow pace.
We are very fortunate to have
such a wonderful special education program here in Columbus.

She is still very thin, about 30 pounds but very active.
After a lot of prayer and thought, we decided to put her on
medication for her hyperactivity.
We started the medication two weeks ago.
She is constantly moving,
I'm sure that has alot to do with her sensory needs.
The therapists told us she needs the stimulation.
She is currently on Risperadol.
She is taking a very low dosage.
Haven't noticed much progress yet. It
does increase the appetite though. She probably won't
put on much weight due to the syndrome, poor growth.

I can't believe the progress
we've seen in the last couple of years. She is such a blessing to us.

Update - November 12, 2000

After Olivia's physical this summer, it was determined that we
should see an orthopedic specialist due to her spine being curved
significantly. After visits to the doctor and x-rays taken,
it was determined that Olivia had scoliosis.
She has a 30 degree curve, which is pretty serious.
She is now wearing a back brace. The brace will not correct
the scoliosis but it prevents the curve from getting worse.
They took an X-Ray with the brace on and her spine is straight,
it was unbelieveable. She wears the brace about 23 hours a day,
obviously not when she's bathing. She has gotten use to it, we
do take it off when she eats, it is pretty constricting. We don't
know the time frame on how long she will have to wear it, I'm sure
it will be years. The doctor suggested she may have to have surgery in
the future (late teen years) to fuse the spine but he wasn't
definite on that.
We'll just wait and see how she grows in the next few years.

She is still on Risperdol. It has helped her slow down and focus
more. Her weight has increased alittle too due to the medication,
she's now 35 pounds. She is now in a 1st grade mild/moderate classroom.
Her progress is slow but her speech has improved and she can identify
all the letters of the alphbet!